Patient Wisdom

Patient Wisdom

Question 8: How has genetic testing benefited you and your family?  

 

Factoid: The Genetics Home Reference provides very patient-friendly information pertaining to the benefits, costs, risks, and limitations of genetic testing. 

We have found out the my brother does not carry the genetic mutation. That has given us peace of mind. Since my sister does, that can help us prevent her from getting cancer rather than treating cancer once it's already there. - Emily Wilson

 

My two highest cancer markers were colon and duodenum. I have had surgeries for both. Caught both before they were cancerous. My next marker is thyroid cancer. - Teresa Weimer

 

Knowledge is power. For those that know they have it, they are equipped to manage the disease and stay on track with the testing. Surgery is not a cure all. This is a life long condition that has to be monitored and not ignored. - Michelle Sutter

 

Helped me to understand who else in my family (siblings, children) should be tested to detect potential high-risk condition. My sisters got tested, and we tested my children, all on advice of our excellent genetic counselor. - Frank Rider

 

We found out I had FAP when I was in fourth grade by genetic testing. FAP runs in my family, but genetic testing helped confirm that I had it at a young enough age to be somewhat proactive about things. - anonymous

 

Saved my life. The prophylactic hysterectomy I had 3 months after my lynch diagnosis revealed I already had Stage I uterine cancer. - anonymous

 

Confirmation that having biological children of my own wasn't the wisest decision I could make. Also assured my sister that she had nothing to worry about; her five kids are going to be free of passing FAP on. - Kelly Livingston

 

It has helped us understand the implications of the syndrome and significantly helped with reaching out to various family members who may also be at risk. - Georgia Hurst

 

I am one of the rare birds with FAP who doesn't have the gene identified. But, my genetic counselor was great in linking me up with great people that have helped tremendously. - Brian Hanson

 

The benefits are the [establishment of an] ongoing testing regime, which works to discover cancers whilst they are easily removed. - Malcolm Strutt

 

It has ruled out most polyposis disorders and helped set a treatment protocol. Depending on your condition, it's important to know what conditions you do or don't have as we know that polyposis syndromes all come with other risks for disease. - Brooke Porretti

 

It allowed me to find my specific mutation, making it easier to test my children. - Allison Brewer

 

We were able to have our family checked. They were relieved when they were cleared. Next month, we will have a genetic counseling for my daughter. - Israel Gonzalez Jr.

 

I knew I was a carrier and had the gene mutation, it allowed me to seek care before I got colon cancer. - Sami Jouni

 

My family is more aware, and shared the results with their doctors, so cancer screenings are an ongoing process. - Niki Mitchell

 

We know that I have the disease and my children do not!!! - Alan Wolf

 

We know which tests are needed to monitor our health. Cancers have been found in early stages. - Brenda Harbin

 

I was the first in my family to have gone through testing and, as a result, I was able to save some family members. I would definitely recommend having genetic testing done. - anonymous

 

I know that I need to focus on the symptoms presented by the child who has FAP and catch the symptoms far earlier. - Nathan Anderson

 

It helped us find out if my sister also inherited the disease. My brother and I already knew we had it because we had polyps. But my sister is younger than us and our mutations were found through genetic testing which allowed my sister to be able to be tested. - Alyssa Zeigler

 

We learned that I was a de novo mutation so my extended family didn't need to get tested and my younger brother could continue to plan his life without worrying about whether or not he was at risk for these future health concerns. - Dakota

 

Genetic testing confirmed Ashlee's duagnosis...and her genetic counselor has been invaluable in assisting us with Ashlee's journey with FAP. - Tiffany Costello

 

It has not benefitted us yet, as I was the first mutation in my family. But it will benefit us in future as my son is to be screened very soon. - Daniel Stapley

 

I knew I was a carrier and had the gene mutation, it allowed me to seek care before I got colon cancer. - Samia Jouni

 

I wish we could have had this years before and known about FAP. There are 5 generations that we have now traced. I was 68 when my colon revealed quite suddenly a carpet of polyps and I had been tested regularly so this surprised the Dr as well and at my age. I had colonoscopies every 5 years since I was 35. - Sandra Redlands

 

By being tested I feel I get better treatment and care.  My sister hasn't been tested, and I don't think that her doctors treat her symptoms or test her with the care and vigilance that I receive at the same hospital. - Tammy

 

It found the mutation and now it will help down the road when I have to have my daughter tested for the mutation. - Whitley Buckles

 

It saved our lives. - Suzanne Pilon

 

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